Here is a little something-something I wrote for the American Diabetes Association last month.
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A Day in the Life of Diabetes
Living with a type 1 diabetic can be challenging. Living with a type 1 toddler and managing their care 24/7 is a test on the limits of your sanity.
We spend our mornings untangling dinosaurs and trucks from insulin pump tubing. We find ourselves constantly cleaning covered CGM sites (I won't tell you in what), and then there's dealing with those seemingly random, unexplainable high BG readings that always leave us guessing—did your sister hide another pack of candy under the couch?
Saul was diagnosed on January 27, 2012. He was 15-months-old. His ability (or lack thereof) to communicate immediately became our first concern. Straight away we started signing "high," "low" and "okay" when doing BG checks which occurred at a rate of 15-20 times a day during the first two months after diagnosis.
1. We were newbies, nervous and maybe a little overcautious.
2. What else could we do? He could never tell us how he felt so we were constantly left wondering—typical tantrum or the result of a high blood sugar? Was that fall just normal gross motor development or the sign of a hypo? I kept telling folks, "If we can just get him talking, it will get easier. It's got to get easier."
A pump, a CGM and a year later we still worry about communication and now face a number of new obstacles – potty-training, sporadic, non-stop picky eating habits and the tantrums. Oh, the tantrums which have only increased in number and display. You know it's the typical two-year-old stuff that all toddlers tackle—just with type 1 tossed in to the mix.
Friends ask me, "But what's it like?"
Much like the nature of the disease, my response is ever changing. Most days however I can see the big picture of life with a chronic illness.
"It's like running a marathon you know will last a lifetime and you're carrying the runner right now. You know that soon you'll have to set them down and let them run on their own even though you'd rather carry them all the way."
Counting every carb in every bite of food that enters his mouth, calculating doses of insulin and giving injections, waking up 3 and 4 times in the middle of the night
every night to check blood sugar levels… These things are easy in comparison to attempting to explain how type 1 diabetes effects a toddler and their loved ones. Some days, diabetes controls our family but some days it doesn't.
Being a caregiver to someone with diabetes is difficult, but we are thankful that with modern medicine, technology and education we are capable of caring for, managing and treating an unpredictable/crazy/chronic illness in a typical/unpredictable/crazy two-year-old toddler.
Sure, Saul will look back and wonder why he wore overalls the first two years of his life—only way we can keep him from ripping off the CGM site on his stomach—and I have no doubt he'll ask why in the world I took so many pictures of him with skittle juice and cake gel on his face.
But ultimately I hope he marvels at our family's attempts to normalize this disease in daily routines and functions. I want him to be amazed at our efforts to educate others and be proud of our advocacy for him and others like him living with this chronic illness.
He needs to know and understand that no one in his family will rest until there's a cure. And until that day, we'll continue to use humor to cope.
Life as a person with diabetes will be the only life Saul knows. It will often be used to describe him but his family is not going to let it define him.
Courtney Grimes lives in Winchester KY with her husband Jeff, four-year-old daughter Harper and their two-year-old son with type 1 diabetes, Saul. She is currently on a leave of absence as a School Library Media Specialist to care for Saul. She blogs about living with a type 1 toddler, as well as a variety of other family antics, at www.myddays.blogspot.com She loves connecting with others with type 1 and type 1 caregivers on Instagram, Facebook, Pinterest and Twitter.
